I have hemiplegic migraines, and have had them for 8 years. Mine are severe, daily, and cause seizures. I have a wonderfull doctor, and am on many meds. Trilepital, verapimil, keppra, ativan, clonopin, percocets, and zofran. I have numbness that travels all over my body, and a constant headache. There are times when I loose my ablility to speak, and there are times when parts of my body go numb. My doctor assures me that this is all normal, however, except I am at a higher risk for stroke. The problem is if I had a stroke I wouldn't know the difference.
The only thing I have found that helps is lots of rest, eating right, and not allowing myself to get stressed. Not an easy combination. I have seizures once a month on average, and have had up to six seizures a day.
Even though I find these episodes frightning, I try to make light of them. The hardest part about the severity of my migraines is explaining to people that I have hemiplegic migraines. They always say things like..I get migraines too, I know what you mean. But they have no idea what hemiplegic migraines are in comparison to normal migraines. I think they should name the disease something else.
There is very little support for us, and very few that suffer from these type of migraines. Like I said, they shouldn't even be called migraines. They seem much more severe than a migraine implies. I have been frustrated for years at the lack of help and understanding of how these episodes affect my life as well as my families life. I have been paralyzed for days, I have collapsed at work, in the store, at parties, and no one understands.
Like I said, I think the episodes should be renamed because no one understands how severe this disorder is.